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HEAL Policy Center of Excellence

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Policy Focus

We Can HEAL Together: Legislation & Issues

Policy History & Impact

Advocacy Tools and Training

Policy Events

Tigerlily Foundation has a 16-year history in the policy landscape. Our goal has always been to advocate for impact by driving policy making to create equity for patients. Patient advocacy leadership has always been key—here within Tigerlily and in guiding public policy. We water the seeds of inspiration and innovation, and working with advocates, advocacy organizations and stakeholders, have created policies and legislation that have changed the lives of millions of people. We are excited to culminate these years of momentum into our Health Equity Advocacy and Leadership (HEAL) Policy Center for Excellence (COE).

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Through Tigerlily’s HEAL Policy COE, we plan to further focus this work by educating, empowering, and lifting patient voices to ensure they are amplified, in order to achieve health equity and end disparities. The HEAL Policy COE will focus on systemic changes through policy at the local, state, and federal level to:
 
  • End barriers to accessing and receiving quality, equitable care for all,
  • Lead innovation through patient-leadership, and
  • Achieve health equity and eliminate disparities in breast cancer.

Through the HEAL Policy COE, we seek to influence policy for these purposes through bi-directional learning, programs, and training to cultivate a center to exchange ideas, activate voices and create lasting change.

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POLICY FOCUS

Tigerlily Foundation is committed to advancing public policy to further our mission to educate, advocate for, empower, and support young women before, during, and after breast cancer. We are striving to make our vision of ending disparities of age, stage, and color in our lifetime a reality through:

  • Health Equity
  • Ending Barriers
  • Access Improvement
  • Leadership through Patient Innovation

We Can HEAL Together: Legislation & Issues

Join us in harnessing your Power of One to make your voice heard and BE THE CHANGE! Click HERE to HEAL together and take action today on these issues and more.

Policy History & Impact

In 2009, the United States Preventative Services Task Force (USPSTF) updated its guidelines to recommend against routine screening mammography for women between ages 40 to 49 and to recommend biennial (every other year), instead of annual (every year), screening mammography for most women between ages 50 to 74. Previously, from 2002–2009, USPSTF guidelines recommended routine screening mammography at least every two years for women aged 40–49 and annual mammography for women 50 years and older.

This change in guidelines was and continues to be very controversial and Tigerlily is especially concerned about the barriers to accessing screening (and thus diagnostic and treatment services) for young women already facing additional barriers and potentially contributing to furthering disparities for patients of color as well as potentially delaying treatment contributing to later-stage diagnoses/progression to metastatic breast cancer. Committed to our mission to educate, advocate for, empower and support young women before, during and after breast cancer and further our vision to end disparities of age, stage and color, Tigerlily turned to public policy to protect patients. Here is a snapshot of the history of our policy work and the impact of our advocacy:

EARLY Act

In 2009, Tigerlily worked with Congresswoman Debbie Wasserman Schultz to develop the Breast Cancer Education and Awareness Requires Learning Young (EARLY) Act. The EARLY Act provides: (1) campaigns to educate the public and health care professionals about young women’s breast health, (2) research into prevention of breast cancer in young women, and (3) support for young women with breast cancer.

The EARLY Act was reauthorized in 2020 which continued the education campaigns, research and support at an increased funding level of $9 million annually from 2022 through 2026.

For more information on the EARLY Act and Tigerlily’s work, please click HERE.

To read the EARLY Act text, click HERE.

PALS Act

In 2014, Tigerlily worked with Congresswoman Debbie Wasserman-Schultz and Susan Brooks to collaborate on the Protecting Access to Lifesaving Screenings (PALS) Act. The PALS Act was designed to ensure that women ages 40-49 continue to have access to annual screening mammography. In 2015, through the appropriations process via the PALS Act, a three-year moratorium was placed on implementing the updated USPSTF breast screening guidelines. The moratorium was subsequently renewed until January 1, 2020 and the Protecting Access to Lifesaving Screenings (PALS) Act of 2021 was introduced in the Senate in July of 2021 to extend the moratorium once again.

The PALS Act requires that any provision of law referring to the current USPSTF breast screening recommendations be administered as if (1) it is referred to USPSTF recommendations issued before 2009 (routine screening mammography at least every two years for women aged 40–49 and annual mammography for women 50 years and older); and (2) those recommendations applied to any screening mammography modality would including any digital modality.

Access to regular, preventative breast screenings for high-risk young women is essential in our effort to eradicate barriers and disparities. And this issue has not dissipated in the years since the USPSTF guidelines update in 2009. In recent years there has been a significant decline in breast cancer screening due to the Coronavirus pandemic. As we try to return to our regular healthcare after the decline since 2020, the PALS Act will assist in removing access and cost barriers for young women needing preventative services.

To read the bill text, click HERE.

ADVOCACY TOOLS

Policy Events

To learn more, email HEAL@tigerlilyfoundation.org

Thank You to Our Generous Partners & Supporters

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Let’s connect on social!

On Day 2 of #PatientRecognitionWeek, we give a shout out to @tigerlilycares founder and CEO @Maimah, a triple-negative #breastcancer survivor. She was diagnosed with stage 2 breast cancer at only 32 years old with no prior family history. 1/2

HOPE Wall: https://bit.ly/3HQzzJ9

With no targeted treatment for triple-negative, @Maimah overcame her fears by stepping into action to create @tigerlilycares. She wanted young women like herself with the disease to know whatever the diagnosis, it doesn’t own you – you decide how to live your life despite it. 2/2

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7 hours ago

Tigerlily Foundation
Grab your friends and the littles in your life, and join us for the annual Pajama Glam party! 💜Guests will be dressed in their best red, pink, or purple pajamas (and brightest bling!) during this event just for young kiddos to learn about the importance of health...and to have so much fun! 🌈Limited tickets are available now! Learn more and reserve your space here: www.eventbrite.com/e/pajama-glam-2023-tickets-518292495807?aff=erelexpmlt ... See MoreSee Less
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Families often are overwhelmed when a loved one is diagnosed with cancer. In some families and in some cultures, cancer is often kept private, and families do not discuss health matters, family health history and how they feel about what’s happening to the one they love. This has an impact on family health and how families cope through illness. Maimah comes from a Black, African family, and is first-generation American. In her family, many personal matters were not discussed. When Maimah went through her cancer journey she had the full support of family, but talking about CANCER and how people or how she felt, was like the elephant in the room. Through Tigerlily Foundation Maimah is working to change the trajectory cancer has within families and encouraging others to start these important and healing conversations. Listen as Maimah has an honest and heartwarming conversation with her brother for the first time about cancer since she was diagnosed with Triple Negative Breast Cancer 17 years ago. This is Maimah's legacy. What’s yours? #MyLifeisMyLegacyMerck Careers Amgen Seattle Genetics, Inc Amgen Sanofi Eli Lilly and Company Daiichi Sankyo Brasil Bayer ... See MoreSee Less
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